‘All about me’ sibling day
April 26, 2024
During the April school holidays, Very Special Kids ran two engaging sibling days for 30 primary aged siblings in Malvern and Epping.
The theme for the day was ‘All about me’ and sought to create an opportunity for siblings to reflect on themselves, what makes them special and what they enjoy. They had the opportunity to get behind the camera, take photos, and create their very own self-portrait.
Days like these offer siblings who have a brother or sister who is sick, or has died, an opportunity to connect with other kids who understand what they are going through.
Siblings who attended the day shared:
“It was one of the best days of my life, it always makes me happy”
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“It was incredible and we did a lot of art and you get to eat a snack whenever you want”
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We also received some feedback from parents about what days like this mean to them and their children. They shared:
“We found a number of sibling activities provided by different organisations but mostly they were offered online which makes [it] hard for young people to get connected. Very Special Kids experience was so valuable for my daughter to understand and make connections with other kids who are in the similar situation. Also, she loved that the whole time was about her.”
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“My kids said they had a great time! Every school holidays they ask if there’s another ”
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“My daughter loved having so many adults giving her undivided attention as at home we are often doing multiple things at once with out Very Special Kids’ daughter. She loved making friends and having choice of activities.”
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Full of fun and meaningful activities, our sibling support program can help children and young people make rewarding and lasting memories in a safe and welcoming environment. The activities are diverse and aim to promote choice, from talking in small groups to jumping on a flying fox and everything in-between.
The power of the Youth Advisory Group
March 28, 2024
Written by Jude, very special sibling and Youth Advisory Group member
The Youth Advisory Group has been a place of constant mutual learning and evolution.
In the time that I’ve been part of this driven group of individuals, I’ve seen the simple power of listening make visible changes to Very Special Kids as a whole. A dedicated stall at family days for the Youth Advisory Group to run activities out of and the impact that our voices have on the running of adolescent centred programs are two prime examples of this change.
In our meetings, there is a genuine sense that conversations have a meaningful direction which I believe is largely thanks to our wonderful leaders, Damienne and Jess, who guide discussions with education, empathy, and adaptability. They aid in keeping our meetings both fun and focused on the relevant topics to the current version of the organisation!
Flexibility and accessibility have been championed in the group with leaders who are skilful in bringing out the uniquely best versions of its members as well as members who always show up with a wildly positive attitude, ready to make change! It feels like feedback is not just asked for but taken seriously which speaks to the deep listening found in this place.
These wonderful people who I now have the honour of calling friends have injected such meaning and connection into my life. The honesty found in the telling of their stories and their openness to listen, learn and love evidence that fact.
Every single one of the individuals who make up the Youth Advisory Group have impacted my life deeply which is a gift I will always be grateful for and I am so excited to continue working with everyone as well as meet any new members who join this year! I am equally excited to see our group involved in events and spaces continuing to create an even more inclusive place for very special youth!
My verdict, Very Special Kid’s Youth Advisory Group is pretty cool!
The Youth Advisory Group (YAG) is an initiative that provides very special siblings between the ages of 14 to 25 a platform to be heard. The group is made up of enthusiastic, motivated, and inspiring young adult and adolescent siblings eager to express their thoughts and ideas in bold, creative ways.
How to communicate with non-verbal children
February 17, 2024
I wish people understood that human connection is the most important aspect of any communication and looks different for any pair of people, including those who are non-verbal.
Very Special Kids mum, Shelley Brown
Last year, our volunteers and staff gained valuable insights from an interactive presentation on how to communicate with non-verbal children.
The session was held by May Anderson and Shelley Brown. Two very special mums who have a personal connection to Very Special Kids.
May and Shelley’s respective daughters, Patricia and Kiah, both graduated from Very Special Kids a few years ago, and are now 21 and 20.
During the interactive class, May and Shelley shared their first-hand knowledge of Augmentative and Alternate Communication (AAC) tools and devices.
Shelley shares, “May and I have previously held drop-in sessions at our daughters’ school. Our aim was to demystify AAC and provide a comfortable environment where parents were able to ask ANY questions without a therapist around!”
During the session, attending volunteers were given a chance to put theory into practice, communicating and listening with quick reference picture cards and more complex communication books.
“Improvement comes from trying. Have a go, make mistakes, laugh at yourself, see the child as the expert of their own communication method and try again.”
Feedback from the session was resoundingly positive, with many volunteers feeling a sense of enthusiasm and confidence to try using a communication book next time a non-verbal young person visited the hospice.
May and Shelley have kindly shared some quick tips that can help anyone improve their communication skills with non-verbal children and young people.
May and Shelley’s quick tips
- Assume competence even when you have no clue what is being said
- Respect their ability and method; don’t make them use yours
- Ask them to demonstrate their ‘yes’ and ‘no’ responses
- ‘Ummm’ can mean time to think and time to construct an answer
- Every attempt is treasured in demonstrating you see them as a valued person
- Communication books are often young people’s ‘voice’ and therefore it is always important to ask permission to use their book first
How to start
If you are at the beginning of your AAC communication journey it can be helpful to simply use the book in one way to begin with. Ask the child in your care if you can use their communication book to chat about your day. Use the image pathways as best you can (with the book visible to the child) and describe something you have done or are interested in.
This can take reading the child’s responses out of the equation and can help you familiarise yourself with their book. It also can give the child such a boost that you are trying to speak their language. If you would like to gain some deeper insight, you can watch Shelley and her daughter Kiah’s detailed interview with Supernal Magazine Australia.
If you are a Very Special Kids volunteer who would be interested in attending a future session, please express your interest at volunteering@vsk.org.au.
‘Tis the season to support Very Special Kids
The holiday season is just around the corner and our very special community is hosting an array of festive fundraising activities! Here are a few ways you can support Very Special Kids this Christmas:
December 12, 2023
Purchase a Petstock Christmas bauble
This festive season, the Petstock Foundation is taking action to inspire magic for children in need. You can support The Christmas Project by purchasing a Christmas bauble decoration in store or online.
All funds from bauble purchases will go far to help take the pressure off families and make Christmas feel special for children in need. Donations can also be made at local Petstock stores or online.
Very special children Breana and Marley feature in Petstock’s video that you can watch below.
Very Special Christmas lights
We are thrilled to have some very festive friends raising funds for Very Special Kids through their Christmas light displays. For location details and to support, please click here.
Two long term supporters of Very Special Kids are also returning with their spectacular displays this Christmas.
Melrome Court Kurunjang Christmas Lights
Brett and his family have raised thousands for Very Special Kids over the years through their showstopping display. This year, they are aiming to add another $5,000 to the tally, in memory of Jonah who tragically died just 90 minutes after birth.
The light show launched on Saturday 9 December and will run until Sunday 24 December in Melrome Court, Kuranjang. For more information and to keep up to date, click here.
Rob and Leonie’s Christmas Lights
Returning for their last hurrah, Rob and Leonie’s Christmas Lights are much loved by the Beaumaris community. Their entire front yard is converted into a Christmas wonderland and Rob and Leonie are aiming to raise $7,000 for Very Special Kids this year.
You can visit every night from 8.30pm until Christmas Eve at 151 Dalgetty Rd, Beaumaris. For more information and to keep up to date, click here.
Support our Christmas Appeal
This Christmas, we have the joy of sharing four-year-old Josiah’s story. Josiah was born with a hole in his heart and a life-limiting neurometabolic condition. For Josiah’s mum Ruth and his dad Travis, every single day has come with unwavering hope for his survival.
Thankfully, things became a little easier from the moment they connected with Very Special Kids. Ruth shared,
“It takes a big load off our shoulders to have the peace of mind that Josiah is being looked after at the hospice.
Having a child with a life-limiting condition means my mind’s racing. My heart’s racing. There’s so much stress that when I finally get to stop, it’s like, ‘Oh, is this what relaxing feels like?”
You can support our Christmas Appeal and read Josiah’s full story here.
Malvern Xmas Trees – SOLD OUT!
Malvern Xmas Trees are selling beautiful fresh Christmas trees again this year, and donating a portion of each sale to Very Special Kids.
You can order online and arrange delivery or choose your tree in person at Very Special Kids, 321 Glenferrie Road, Malvern:
- Monday to Friday, 10am to 5pm
- Saturday and Sunday, 7am to 5pm
Josiah’s story
December 8, 2023
When you hear Josiah’s cheerful giggle, you can’t help but smile. He is one of the most joyful little boys you could ever meet.
But Josiah entered the world fighting for his life. Josiah was born with a hole in his heart and a life-limiting condition.
For his mum Ruth and his dad Travis, every single day has come with desperate hope for their son’s survival.
Now four years old, Josiah’s neurometabolic condition affects him every day and night. He has difficulty breathing and is susceptible to respiratory illnesses with multiple cases of serious pneumonia. His vision is significantly impaired, and he has low muscle tone that can make it impossible to do simple things like sit on his own.
To this day, there is no treatment for Josiah’s condition. Not even a reference point.
But things became a little easier from the moment him and his family connected with Very Special Kids.
At 13 months old, Josiah came for his first overnight stay in Very Special Kids children’s hospice. It was the first time Ruth and Travis felt they could leave him somewhere — with the peace of mind that he was well cared for.
Nobody truly gets the mental load and the stress that comes with having to make the right decisions for a child like Josiah.
To have Josiah monitored by people who can dedicate the time and who care enough to do it too, that is everything to me. I trust Very Special Kids more than anyone with him.
If you can give a gift this Christmas, it will help to support families like Josiah’s with everything from hospice respite care to counselling.
“For us, Christmas is about hope. It’s a time of gratitude. Josiah is a gift. He may have a lot of complexities but, looking back to when he was born, it’s a miracle to see him get to where he’s at now.”
Please send your kind Christmas gift as soon as you can to help fund vital respite through our children’s hospice over the Christmas period.
Click here to donate today!
Victoria’s only children’s hospice gets a world-class revamp
December 4, 2023
The 21st of November 2023 will always be remembered as the day Very Special Kids unveiled its newly rebuilt children’s hospice – the Sister Margaret Noone Hospice at Very Special Kids House.
After six years of meticulous research, development and planning, our long-held dream of a world-class children’s hospice has become a reality. Very Special Kids House will provide world’s best practice facilities and specialist support, respite and end-of-life care for children and their families.
Although a paediatric palliative care facility, the state-of-the-art new centre is designed as a bright home-away-from-home featuring spaces for music and art therapy, a wheelchair-accessible playground, a hydrotherapy pool, and our resident therapy dog Jaffa.
It is the only facility of its calibre in Australia and the only children’s hospice in Victoria.
Today is very much a celebration of what communities can achieve together… This very important event marks the end of a long journey and the start of a new chapter in holistic palliative care for Victorian children and families.
The state-of-the-art facility is the legacy of Very Special Kids’ first employee and patron, Sister Margaret Noone – who opened the doors to the first Very Special Kids House in 1996. Sister Margaret had the well-deserved honour of cutting the ribbon, officially opening the doors to our rebuilt facility.
We were honoured to celebrate this watershed moment with key members of our philanthropic community who helped bring this project to life. A big thank you to the Commonwealth and Victorian Governments for their significant contribution, the tireless efforts of our Capital Campaign Committee, and the generosity of our community including Gandel Foundation, Victoria Racing Club and Chain Reaction Challenge Foundation.
The Honorable Jed Kearney, Assistant Minister for Health and Aged Care shared, “I couldn’t be more privileged to be here to mark such an important day for Very Special Kids… Every child has the right to the best quality of life, no matter how long that life is or how short that little life might be.”
Very Special Kids House will provide a safe haven for many children, including 12-year-old Mia who was staying at the hospice.
“Very Special Kids is everything and more,” shares Mia’s mum Margie.
“I trust this place with my daughter’s life…I went home, and I slept for the first time without playing doctor, nurse support worker or anything else.”
The grand opening of Very Special Kids House coincided with Very Special Kids’ annual matched giving day fundraiser – A Very Special Day – meaning every donation made by the public was doubled for 24 hours.
Special thank you to Neil Mitchell and the 3AW team, who provided coverage for Very Special Kids throughout the hospice opening ceremony and A Very Special Day.
Generous donors opened their hearts and wallets to support children with life-limiting illnesses, giving a record $827,748. We are so grateful to the community who surrounds us, ensuring Very Special Kids House can deliver the very best holistic palliative care now and into the future.
End-of-year family day fun
November 29, 2023
On Sunday 25 November, over 100 very special families joined us at our Malvern grounds for a joyful and fun end-of-year family day celebration.
The entertainment was endless with interactive stalls, fun activities and special guests to keep the kids captivated.
There was also an opportunity for parents and carers to visit our pop-up toy store and purchase discounted gifts for the holiday season, with all proceeds going back towards Very Special Kids services.
Navigating crowded shopping centres can be a difficult and stressful experience for families who have or have had a child with a life-limiting condition. Thankfully, the free-of-charge support from Heartfelt Photography also meant families can capture their Santa or family portraits in a safe and supportive environment.
Our Youth Advisory Group – Very Special Kids siblings aged between 14 to 25 – hosted a variety of ball games and fun activities for everyone to participate in. While the animal barn and reptile encounters were a firm favourite for the more adventurous kids!
The arrival of Santa was highly anticipated and, on a fire truck provided by the Glen Iris & Windsor teams from Fire Rescue Victoria, certainly didn’t disappoint. Children also welcomed a visit from Malvern Police Station.
The end-of-year family day would not have been possible without the support of our devoted volunteers who helped in the lead up and on the day. Special mention to our volunteer bakers who cooked up some sweet treats, as well as our artistic face painters who created festive designs!
We are so grateful to all our wonderful suppliers, many who gifted their services for the day or time, free-of-charge.
A walk to remember
September 27, 2023
On Sunday 10 September, our very special community came together to participate in A Walk to Remember.
This event was centred around community, connection, legacy and paying tribute to the beautiful children and young people who live on in our memories.
We are so grateful to all who attended and contributed to this special event in Malvern and Castlemaine. One mum, Jodie, shared a beautiful reflection of this special day.
While we talk about and remember Mylah, every single day, it’s always nice to be asked about her, and speak freely about her, with people who just truly understand, and don’t get uncomfortable with the uncomfortable topic/s, specifically baby and child loss.
That’s why we are always so incredibly grateful for the organisations who take the time to acknowledge our loss and give us the opportunity to include and remember Mylah in celebrations.
Today we attended Very Special Kids event, A Walk To Remember, held at the Buda Historic Home & Garden in Castlemaine. A wonderful opportunity to join fellow bereaved families in remembering and honouring our children who have sadly died too soon.
Constantly aware of creating meaningful memories and connections with our babies (children), today we got to create a beautiful craft piece, complete with a crochet item generously donated.
Flynn and Addi (Mylah’s siblings) had a wonderful time creating such a beautiful memory, which now proudly hangs on our special Mylah’s memory shelf.
How a volunteer made Bibi’s hospital visit fun
September 26, 2023
Visiting the hospital can be an anxious and stressful experience. If you are a parent of a child or young person with a life-limiting condition, the hospital can also become an unwanted second home.
Five-year-old Bibi and her mum Bronwyn are very familiar with this routine. Every three months, they attend the Neuromuscular Clinic at Royal Children’s Hospital. A visit to the clinic can last four to five hours, in which time Bibi will see up to five specialists in no apparent order or specific time slot.
“It’s very hard to entertain a five-year-old in a small space and help them to be patient under circumstances like this,” shares Bronwyn.
“If you leave the waiting room to get food or go to the toilet or just to go for a short walk, you can miss appointments and prolong the day.”
This is where Very Special Kids’ hospital volunteer program can step in.
Designated volunteers visit the hospital to provide a helping hand to very special kids and their families.
It was a huge relief to have a volunteer there to play with Bibi. It helped to change her experience of RCH from a medicalised and negative experience to a fun and positive one!
– Bibi’s mum, Bronwyn
According to her mum, Bibi was enamoured with her ‘special friend’ Danielle. They enjoyed a range of activities together, including art, craft, drawing and reading storybooks, as well as a visit to the outdoor playground.
Not only did this have a tremendous impact on Bibi, but it also helped her mum Bronwyn. Thanks to Danielle’s assistance Bronwyn could see Bibi’s geneticist by herself, she had the time to ask questions and have more of a frank discussion about Bibi’s condition.
Speaking of her own experience, volunteer Danielle shares, “I value the opportunity to bring a small piece of the Very Special Kids team to families at a time when kids are potentially disconnected from all their other networks.”
“I get to not only play and connect with the kids, but also chat with parents, grandparents and carers.”
After spending time with Danielle, Bibi is less hesitant to visit RCH for upcoming appointments. Her mum Bronwyn plans to reach out to Very Special Kids, as soon as she knows her next appointment date so they can have more volunteer support in future.
Very Special Kids have a team of trained volunteers, who are rostered to visit the children in our care during their stay at The Royal Children’s Hospital and Monash Children’s Hospital.
If you are a Very Special Kids family, and would like to have a volunteer visit you or your child during their hospital stay, please express your interest here.
Luca’s story
September 15, 2023
Eight-year-old Luca is known by many nicknames. From cuddly koala to cookie monster, his cheeky personality always shines through! You might not know from his charming grin, but Luca has experienced countless hurdles in his short life.
At only three weeks old Luca turned blue. By the time he reached emergency he was limp and unresponsive and was rushed to the resuscitation area by a team of doctors.
Luca’s parents, Nadja and Marc, spent the next five nights with their little boy in the newborn intensive care unit.
“We hoped it was just a one-off thing,” shares Nadja. “But along the way, everything that would be a little problem on a normal kid, would just end up being huge for Luca.”
By Christmas time, Luca was regressing even further. He experienced non-stop seizures, couldn’t cry or laugh and slept 17+ hours a day. Doctors told his family to prepare for the worst.
“Every morning, I’d go to his room and check if he was still alive. There were a lot of tears at that time, and so much was unknown,” shares Nadja.
Marc continues, “No one could give us any kind of timeline. We started speaking to palliative care and preparing for all the kinds of things you would normally do towards the end of someone’s life.”
This is when Marc and Nadja first learnt about Very Special Kids House, a place that could provide Luca and his family a much-needed break
Recalling their initial hesitation Nadja shares, “When it’s your child, you want to be very careful who you’re trusting them to, especially when they have a disability.
Once we knew it was a safe place for Luca, Very Special Kids was amazing. You just feel such a big weight off your shoulders… like you can breathe easier.
On an average hospice stay, Luca will spend quality time with highly trained nurses and therapists.
His favourite activities include zipping around in his wheelchair, crawling through the multi-sensory room and splashing in the bath.
Another firm favourite is art therapy. Nadja laughs,
“He’s not afraid to get his hands dirty! He likes the colours, texture and it seems to make him happy. It’s also so special to see his artwork when we pick him up.”
It also offers Nadja, Marc and Luca’s big sister Lilijana an opportunity for some much-needed respite.
“When I pick up Luca from Very Special Kids, I know he’s had a great time and I just give him so much extra love because I’ve had that time to breathe.”
“It also gives Lili that one-on-one time with us, without us having to worry Luca is okay.”
To this day, Luca hasn’t been given an official diagnosis. While his condition is stable, every day can be unknown for his family.
Very Special Kids has stood by the side of countless children and families as they navigate life and death with childhood life-limiting illness. Thanks to the support of our generous community, children like Luca can experience the best quality of life – no matter how long or short their life may be.
Speaking to their own experience, Marc shares, “We feel better about using the services if we know we’ve helped them survive. It’s nice to be able to give back.”
Nadja adds, “The best way to support families like ours is to support those who support us. We are very lucky to have Luca, and we’re very lucky to have Very Special Kids in our life.”
